Development of a physical activity intervention for managing fatigue in rheumatoid arthritis. PhD

499 Pages·2017·6.15 MB·English

Development of a physical activity intervention for
managing fatigue in rheumatoid arthritis

Victoria Emmeline Salmon

A thesis submitted in partial fulfilment of the
requirements of the University of the West of England,
Bristol for the degree of Doctor of Philosophy

Faculty of Health and Applied Sciences
University of the West of England, Bristol

December 2015
This copy has been supplied on the understanding that it is copyright material and
that no quotation from the thesis may be published without proper
acknowledgement.
Abstract

Abstract
Rheumatoid arthritis (RA) is a chronic, inflammatory auto-immune disease. Fatigue
is a major symptom of RA and has a considerable impact on patients’ daily lives. RA
patients report that they struggle to manage their fatigue and receive little professional
support. Currently there are no physical activity (PA) interventions that have been
specifically designed to manage RA fatigue. However, secondary outcomes for fatigue in
PA trials in RA suggest that it may be beneficial. This is supported by evidence in other
long-term conditions. A pragmatic mixed methods approach was undertaken to explore
the potential use of PA to manage RA fatigue and to develop a PA intervention specifically
for fatigue management.
A series of iterative studies was conducted using a range of methodologies,
including systematic literature reviews, semi-structured interviews, focus groups,
systematic intervention development and a proof-of-concept study. A review of existing
evidence demonstrated a small beneficial short-term effect of PA for managing RA fatigue
but this was based on secondary outcomes in low quality studies. A lack of evidence was
also identified for theory-based interventions to promote engagement in and long-term
maintenance of PA in RA.
Semi-structured interviews with healthcare professionals (HCPs) delivering existing
PA interventions in other long-term conditions confirmed a lack of an explicit theoretical
basis for these programmes. However, participants acknowledged the importance of
addressing motivational and psychosocial issues in order to change PA behaviour in
patients with fatigue. Programmes varied in terms of format and delivery, but consistent
findings included graded approaches to exercise and a flexible approach to
implementation and delivery. Findings were subsequently discussed in focus groups with
RA patients and rheumatology HCPs. Preferences for similar interventions in RA were
identified, for example, a face-to-face group programme incorporating a practical PA
session to develop self-management skills and address barriers to PA. Practicalities
regarding implementation were noted, including staffing and resource issues.
Existing evidence and primary data generated by the qualitative studies were used
to develop a PA self-management programme using the Behaviour Change Wheel, a
theoretical framework for behaviour change interventions. The novel intervention was
delivered to a group of RA patients to model implementation and delivery processes and
to explore acceptability. Findings suggested that the intervention was deliverable, and
content and support materials were acceptable to this group of participants.
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Abstract

These findings have implications for clinical practice as RA patients and
rheumatology HCPs acknowledged that current fatigue management could be improved.
The use of PA for managing fatigue was supported by patients and professionals. This
theoretically-informed intervention should now be considered for further evaluation in a
feasibility and pilot study prior to full scale testing in a randomised controlled trial.
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Acknowledgements

Acknowledgements
Thank you to all the patients and health professionals who have taken part in this
research. You are all busy people and I am very grateful for your time,
commitment and ideas. Many thanks to my patient research partners, Marie Urban
and Maria Morris, for your hard work and support throughout this project.
I am extremely grateful for the financial support from University Hospitals Bristol
NHS Foundation Trust for giving me the opportunity to undertake this PhD
fellowship and for funding the research.
Enormous thanks to my supervisory team. Doctor Fiona Cramp has been a
brilliant director of studies, providing unending support and encouragement from
start to finish. Professor Sarah Hewlett and Doctor Nicola Walsh have been an
inspiration, sharing their knowledge and expertise, and offering encouragement
every step of the way. Thank you all for listening to me in my anxious moments
and for your thoughts, ideas and comments on every draft. Thank you to Professor
John Kirwan for your input as clinical advisor, for your constant enthusiasm and
encouragement. Thanks also to Louise Jones for helping to deliver the intervention
and for all the lifts to Bath!
Very special thanks to my office companions and fellow PhD students, Serena
Halls and Oonagh Wilson. Thank you for being there through the highs and lows,
listening to my rants and ramblings, and generally being a constant source of
support for the duration of this PhD journey. Thank you to Doctor Caroline Flurey
for sharing your PhD knowledge and answering my incessant questions. Thanks
to Julie Taylor, Katy Buchan and other PhD travellers who have supported me
along the way. Thank you to all the clinical and academic staff at the rheumatology
unit who have helped me over the past three years.
Thank you to my wonderful friends and family for your constant love and support
and for always being there for me.
To my wonderful parents, you have been an inspiration to me throughout my life. I
am hugely grateful for everything you have done for me, for always believing in me
and for providing the most amazing love and support. I hope I have made you
proud.
Finally, to my darling Vik. I am eternally grateful for your endless love and
patience. You have looked after me in so many ways and have given me the
strength and confidence to see this through to the end.
To Vik, Mum and Dad, I dedicate this thesis to you, with all my love.

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Table of contents

Table of contents
ABSTRACT .................................................................................................................................................... I
ACKNOWLEDGEMENTS .............................................................................................................................. III
TABLE OF CONTENTS ................................................................................................................................. IV
LIST OF BOXES ......................................................................................................................................... XIV
LIST OF FIGURES ...................................................................................................................................... XIV
LIST OF TABLES ......................................................................................................................................... XV
LIST OF ABBREVIATIONS ........................................................................................................................ XVII
CHAPTER 1: INTRODUCTION TO THE THESIS ................................................................................................ 1
1.1 RHEUMATOID ARTHRITIS ............................................................................................................................... 1
1.1.1 Patient reported problems in rheumatoid arthritis .......................................................................... 2
1.1.1.1 Pain ........................................................................................................................................................... 2
1.1.1.2 Fatigue....................................................................................................................................................... 3
1.2 MANAGEMENT OF RHEUMATOID ARTHRITIS ...................................................................................................... 5
1.2.1 Pharmacological approaches ............................................................................................................ 5
1.2.2 Non-pharmacological approaches .................................................................................................... 6
1.2.2.1 Self-management of rheumatoid arthritis ................................................................................................ 6
1.2.2.2 Physical activity in rheumatoid arthritis .................................................................................................... 7
1.3 MANAGEMENT OF FATIGUE IN RHEUMATOID ARTHRITIS ..................................................................................... 11
1.3.1 Pharmacological approaches .......................................................................................................... 12
1.3.2 Non-pharmacological approaches .................................................................................................. 12
1.3.1.1 Physical activity to reduce the impact of RA fatigue ............................................................................... 13
1.4 PURPOSE OF THE THESIS .............................................................................................................................. 15
1.4.1 Rationale ......................................................................................................................................... 15
1.4.2 Aim .................................................................................................................................................. 15
1.4.3 Objectives........................................................................................................................................ 15
1.4.4 Researcher perspective ................................................................................................................... 16
1.4.4.1 Prior knowledge ...................................................................................................................................... 16
1.4.4.2 Epistemological position ......................................................................................................................... 16
1.4.5 Patient research partner involvement ............................................................................................ 16
1.4.6 Thesis structure ............................................................................................................................... 17
CHAPTER 2: PHYSICAL ACTIVITY FOR MANAGING FATIGUE IN RHEUMATOID ARTHRITIS .......................... 18
2.1 BACKGROUND ........................................................................................................................................... 18
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Table of contents

2.1.1 Description of the condition ............................................................................................................ 18
2.1.2 Description of the intervention ....................................................................................................... 18
2.1.3 How the intervention might work ................................................................................................... 18
2.1.4 Why is it important to do this review .............................................................................................. 19
2.2 OBJECTIVES .............................................................................................................................................. 19
2.3 METHODS ................................................................................................................................................ 19
2.3.1 Criteria for considering studies for this review ............................................................................... 19
2.3.2 Search methods for identification of studies .................................................................................. 20
2.3.3 Data collection and analysis ........................................................................................................... 21
2.3.3.1 Selection of studies ................................................................................................................................. 21
2.3.3.2 Data extraction and management .......................................................................................................... 21
2.3.3.3 Risk of bias............................................................................................................................................... 22
2.3.3.4 Measures of treatment effect ................................................................................................................. 23
2.4 RESULTS ................................................................................................................................................... 23
2.4.1 Results of the search ....................................................................................................................... 23
2.4.2 Description of studies ...................................................................................................................... 25
2.4.3 Participants ..................................................................................................................................... 25
2.4.4 Interventions ................................................................................................................................... 25
2.4.4.1 Length of intervention............................................................................................................................. 25
2.4.4.2 Type of physical activity .......................................................................................................................... 29
2.4.4.3 Frequency and duration of physical activity ............................................................................................ 29
2.4.4.4 Intensity of physical activity .................................................................................................................... 29
2.4.4.5 Intervention delivery ............................................................................................................................... 29
2.4.4.6 Intervention adherence .......................................................................................................................... 30
2.4.5 Outcome measures ......................................................................................................................... 30
2.4.6 Adverse events ................................................................................................................................ 30
2.4.7 Risk of bias ...................................................................................................................................... 30
2.4.7.1 Random sequence generation and allocation concealment (selection bias) .......................................... 31
2.4.7.2 Blinding (performance and detection bias) ............................................................................................. 32
2.4.7.3 Incomplete outcome data (attrition bias) ............................................................................................... 32
2.4.7.4 Selective outcome reporting (reporting bias) ......................................................................................... 32
2.4.7.5 Other sources of bias .............................................................................................................................. 33
2.4.8 Effect on fatigue.............................................................................................................................. 33
2.4.8.1 Meta-analysis .......................................................................................................................................... 34
2.4.8.2 Long-term follow-up ............................................................................................................................... 34
2.5 DISCUSSION .............................................................................................................................................. 35
2.5.1 Other systematic reviews ................................................................................................................ 38
2.5.2 Limitations of the review ................................................................................................................ 40
2.6 CONCLUSIONS ........................................................................................................................................... 40
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CHAPTER 3: PHYSICAL ACTIVITY FOR MANAGING FATIGUE IN LONG-TERM CONDITIONS ......................... 42
3.1 FATIGUE IN LONG-TERM CONDITIONS ............................................................................................................. 42
3.1.1 Multiple sclerosis ............................................................................................................................ 42
3.1.2 Chronic fatigue syndrome ............................................................................................................... 42
3.1.3 Cancer ............................................................................................................................................. 43
3.2 EVIDENCE OF EFFECTIVENESS OF PHYSICAL ACTIVITY FOR MANAGING FATIGUE ........................................................ 43
3.2.1 Search strategy ............................................................................................................................... 43
3.3 OVERALL FINDINGS ..................................................................................................................................... 45
3.3.1 Effectiveness of interventions ......................................................................................................... 45
3.3.1.1 Chronic fatigue syndrome ....................................................................................................................... 45
3.3.1.2 Cancer ..................................................................................................................................................... 46
3.3.2 Type of physical activity .................................................................................................................. 47
3.3.2.1 Chronic fatigue syndrome ....................................................................................................................... 47
3.3.2.2 Cancer ..................................................................................................................................................... 48
3.3.3 Duration, intensity and frequency of physical activity .................................................................... 49
3.3.3.1 Chronic fatigue syndrome ....................................................................................................................... 49
3.3.3.2 Cancer ..................................................................................................................................................... 49
3.3.4 Intervention delivery ....................................................................................................................... 50
3.3.4.1 Chronic fatigue syndrome ....................................................................................................................... 50
3.3.4.2 Cancer ..................................................................................................................................................... 50
3.3.5 Adherence ....................................................................................................................................... 51
3.3.5.1 Chronic fatigue syndrome ....................................................................................................................... 51
3.3.5.2 Cancer ..................................................................................................................................................... 52
3.3.6 Follow-up ........................................................................................................................................ 53
3.3.6.1 Chronic fatigue syndrome ....................................................................................................................... 53
3.3.6.2 Cancer ..................................................................................................................................................... 53
3.3.7 Cost-effectiveness ........................................................................................................................... 54
3.3.7.1 Chronic fatigue syndrome ....................................................................................................................... 54
3.3.7.2 Cancer ..................................................................................................................................................... 54
3.3.8 Maintaining changes in physical activity ........................................................................................ 54
3.4 DISCUSSION .............................................................................................................................................. 56
3.4.1 Limitations of the evidence ............................................................................................................. 56
3.4.2 Limitations of the review ................................................................................................................ 57
3.5 CONCLUSION ............................................................................................................................................ 58
CHAPTER 4: A SYSTEMATIC LITERATURE REVIEW OF INTERVENTIONS PROMOTING PHYSICAL ACTIVITY IN
RHEUMATOID ARTHRITIS .......................................................................................................................... 59
4.1 BACKGROUND ........................................................................................................................................... 59
4.1.1 Description of the condition ............................................................................................................ 59
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4.1.2 Description of the intervention ....................................................................................................... 60
4.1.2.1 Models and theories of behaviour change .............................................................................................. 60
4.1.2.2 Techniques for changing behaviour ........................................................................................................ 62
4.1.3 How the intervention might work ................................................................................................... 62
4.1.4 Why it is important to do this review .............................................................................................. 62
4.2 OBJECTIVE ................................................................................................................................................ 63
4.3 METHODS ................................................................................................................................................ 63
4.3.1 Study Design ................................................................................................................................... 63
4.3.2 Criteria for considering studies for this review ............................................................................... 63
4.3.2.1 Types of studies ....................................................................................................................................... 63
4.3.2.2 Types of participants ............................................................................................................................... 63
4.3.2.3 Types of interventions ............................................................................................................................. 63
4.3.2.4 Types of outcome measures ................................................................................................................... 64
4.3.3 Search methods for identification of studies .................................................................................. 64
4.3.4 Data collection and analysis ........................................................................................................... 66
4.3.4.1 Selection of studies ................................................................................................................................. 66
4.3.4.2 Data extraction and management .......................................................................................................... 66
4.3.4.3 Assessment of risk of bias in included studies ........................................................................................ 66
4.3.4.4 Measures of treatment effect ................................................................................................................. 67
4.4 RESULTS ................................................................................................................................................... 68
4.4.1 Results of the search ....................................................................................................................... 68
4.4.2 Description of studies ...................................................................................................................... 68
4.4.3 Participants ..................................................................................................................................... 68
4.4.4 Interventions ................................................................................................................................... 70
4.4.4.1 Use of health behaviour change theory and behaviour change techniques ........................................... 77
4.4.4.2 Mode of delivery ..................................................................................................................................... 79
4.4.4.3 Length of intervention and frequency, duration and number of sessions .............................................. 79
4.4.1.4 Intervention adherence .......................................................................................................................... 79
4.4.5 Outcome measures ......................................................................................................................... 79
4.4.6 Adverse events ................................................................................................................................ 80
4.4.7 Risk of bias in included studies ........................................................................................................ 80
4.4.7.1 Random sequence generation and allocation concealment (selection bias) .......................................... 81
4.4.7.2 Blinding (performance and detection bias) ............................................................................................. 81
4.4.7.3 Incomplete outcome data (attrition bias) ............................................................................................... 82
4.4.7.4 Selective reporting (reporting bias)......................................................................................................... 83
4.4.7.5 Other sources of bias .............................................................................................................................. 83
4.4.8 Main effect of interventions on physical activity ............................................................................ 84
4.5 DISCUSSION .............................................................................................................................................. 85
4.5.1 Limitations of the review process ................................................................................................... 88
4.5.2 Other systematic reviews ................................................................................................................ 89
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4.6 CONCLUSIONS ........................................................................................................................................... 90
CHAPTER 5: EXPLORING THE EXPERIENCES OF HEALTH PROFESSIONALS DELIVERING PHYSICAL ACTIVITY
INTERVENTIONS FOR FATIGUE MANAGEMENT IN LONG-TERM CONDITIONS ........................................... 91
5.1 BACKGROUND ........................................................................................................................................... 91
5.2 AIMS ....................................................................................................................................................... 92
5.3 METHODS ................................................................................................................................................ 92
5.3.1 Research design .............................................................................................................................. 92
5.3.2 Identification and sampling ............................................................................................................ 93
5.3.3 Data collection ................................................................................................................................ 93
5.3.3.1 Topic guide and questionnaire development .......................................................................................... 94
5.3.4 Analysis ........................................................................................................................................... 96
5.3.4.1 Interview data ......................................................................................................................................... 96
5.3.4.2 Hybrid thematic analysis process ............................................................................................................ 97
5.3.4.3 Questionnaire data ................................................................................................................................. 99
5.3.5 Ensuring quality .............................................................................................................................. 99
5.4 RESULTS ................................................................................................................................................... 99
5.4.1 Participants ..................................................................................................................................... 99
5.4.2 Programme information – questionnaire data ............................................................................. 100
5.5 THEMATIC ANALYSIS OF QUALITATIVE INTERVIEWS .......................................................................................... 103
5.5.1 Theme 1: Programme structure .................................................................................................... 105
5.5.1.1 Format ................................................................................................................................................... 105
5.5.1.2 Content ................................................................................................................................................. 107
5.5.2 Theme 2: Implementation ............................................................................................................. 115
5.5.2.1 Delivery ................................................................................................................................................. 115
5.5.2.2 Methods of behaviour change .............................................................................................................. 121
5.5.3 Theme 3: Theoretical approach .................................................................................................... 123
5.5.3.1 Theory of behaviour change ................................................................................................................. 123
5.5.3.2 Theory of causal mechanisms of fatigue ............................................................................................... 123
5.5.4 Theme 4: Intervention outcome .................................................................................................... 124
5.5.4.1 Attendance ............................................................................................................................................ 124
5.5.4.2 Perceived outcome ............................................................................................................................... 125
5.5.4.3 Perceived barriers to good outcome ..................................................................................................... 126
5.5.4.4 Long-term physical activity outcome .................................................................................................... 126
5.5.4.5 Outcome measurement and programme evaluation ............................................................................ 127
5.6 DISCUSSION ............................................................................................................................................ 129
5.6.1 Strengths and limitations .............................................................................................................. 135
5.7 CONCLUSIONS ......................................................................................................................................... 136
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